Why Is Lyme Disease Not Covered By Insurance?
In the summer of 2022, as the country recovers from the coronavirus pandemic that swept across the globe, another pandemic is lurking in their backyard, and never left the average person spends the most time, their home. . Tick season is here and thousands of families will begin to experience the impacts of forgotten tick bites received during the spring and upcoming summer months only to begin a journey of education and acceptance.
Unaware of the potential complications and financial resources required, thousands of families will begin to visit dozens of doctors that will span over the course of years and potentially decades to pursue “alternative treatment” that is often stigmatized by the medical community and not covered by insurance companies.
According to the Centers for Disease Control and Prevention (CDC), Lyme Disease is the fastest growing vector-borne, infectious disease in the United States, overtaking Zika Virus and West Nile Virus, with the number of cases reportedly increasing annually nearly 25-fold since reporting began in 1982.
The Centers for Disease Control and Prevention (CDC) estimates that there are currently 300,000 new cases of Lyme Disease each year, but they state there are no accurate tests to quantify the number of new cases, which could well be in the millions.
A tick bite and bull’s eye rash are the two most common physical markers for an infection of the spirochete (spiral-shaped) bacteria known as bacterium borrelia burgdorferi, which is transmitted to humans through the bite of infected black-legged (deer) ticks.
However, recent polling evaluating the effectiveness of Lyme Disease diagnoses found that 50% of “diagnosed” Lyme Disease patients did not recall a tick bite, and that less than 50% recalled receiving the characteristic “bull’s eye” rash.
The main reason Lyme Disease is difficult to detect is that the symptoms can be obscure. Due to the obscure symptoms associated with Lyme, the disease is often referred to as the Great Imitator as it commonly imitates the symptoms of other illnesses.
Lyme Disease is often misdiagnosed as numerous conditions and diseases, including but not limited to Autism, Amyotrophic Lateral Sclerosis (ALS), Alzheimer’s, Crohn’s Disease, Chronic Fatigue Syndrome, Fibromyalgia, Irritable Bowel Syndrome (IBS), Lupus, Parkinson’s, Prostatitis, or Multiple Sclerosis, just name to a few.
In a Statement for the House Foreign Affairs Committee from 2012, the Infectious Diseases Society of America (IDSA) stated the following: “IDSA recognizes that Lyme Disease can be painful and that the disease is not always properly identified or treated” and later goes to say “We sympathize with these patients’ suffering, but remain concerned that a diagnosis of so-called Chronic Lyme Disease, suggesting that active infection is ongoing, is not supported by scientific evidence and, more alarmingly, the treatment of long-term antibiotic therapy will do patients more harm than good.”
The Infectious Diseases Society of America (IDSA) also goes on to state that a majority of Lyme Disease cases are “successfully treated with 10-28 days of antibiotics”, and that “long term antibiotics have not been found to effectively treat symptoms that persist after the initial infection is cleared.”
Per the Infectious Disease Society of America (IDSA) guidelines, a single dose of doxycycline is recommended after potential exposure to the bacterium Borrelia burgdorferi microbes via a tick bite.
On the other hand, if you were to speak with actual Lyme Disease patients or those in the trenches fighting this vector-borne epidemic, most familiar with the disease would say that depending on the duration and severity of the infection, antibiotics will help but most likely not knock the bacteria or debilitating symptoms into remission, and turn to alternative treatments such as hyperthermia for Lyme Disease treatment in Arizona.
The International Lyme And Associated Diseases Society (ILADS) is a medical society dedicated to the appropriate diagnosis and treatment of Lyme Disease and associated disease.
Contrary to the guidelines published by the Infectious Disease Society of America (IDSA), ILADS states that “there has never been a study demonstrating that 30 days of antibiotic treatment cures chronic Lyme Disease. However, there is much documentation demonstrating that short courses of antibiotic treatment fail to eradicate the Lyme spirochete.”
In the desire to receive answers and acquire an official diagnosis, the average Lyme Disease patient will see 5 or more doctors over the span of 2 years, spending significant amounts of money and potentially losing the ability to hold down a full-time job with health insurance benefits.
The current stance by the Centers for Disease Control (CDC) and private insurance companies is that “Chronic Lyme Disease” does not exist, and is associated with costly experimental and expensive treatments.
Stating that “Chronic Lyme Disease” is a diagnosis used by medical providers to describe patients with a variety of unexplained symptoms, the Centers for Disease Control (CDC) and insurance companies see any treatment from Lyme Literate Medical Doctors (LLMD) as practitioners of unproven treatments, particularly the use of long-term antibiotic therapy.
As insurance companies rely on policy and guidelines in making coverage decisions, insurance companies are not obligated to cover the treatment of Lyme Disease per the guidelines issued by the Infectious Diseases Society of America (IDSA), which insurance companies rely on to systematically deny claims associated with the treatment of Lyme Disease.
Consequently, a majority of all “Lyme Literate” Medical Doctors (LLMD) are not in-network with any of the major insurance companies, and most treatment programs are IV therapy drips, resulting in patients being obligated to pay for all Lyme Disease Treatment upfront, requiring significant amounts of financial resources.
Unfortunately, if an individual gets seriously ill in the United States and does not have applicable insurance benefits, there is not much of a safety net, requiring most families to make difficult financial decisions in order to receive treatment historically not covered by health insurance.
Serving as patient advocacy services for patients, Medical Bill Gurus assists individuals of all backgrounds, diagnoses, and incomes in navigating the financial complications associated with the rising cost of healthcare and dwindling network of coverage provided by insurance companies.
Our goal at Medical Bill Gurus is to provide a risk-free option to recovering financial resources, providing free insurance policy evaluation and free medical bill evaluations.
If you have already received treatment or are considering treatment and would like to learn about the specifics of your insurance policy or have us look at your medical bills, feel free to SIGN UP for a FREE CASE EVALUATION.
- Statement for the House Foreign Affairs Committee
Africa, Global Health and Human Rights Subcommittee’s Hearing on
Global Challenges in Diagnosing and Managing Lyme Disease — Closing Knowledge Gaps
Submitted by the Infectious Diseases Society of America
July 17, 2012
- ILADS Lyme Disease Facts
- Diagnostic challenges of early Lyme disease
- Infectious Diseases Society of America Lyme
8 thoughts on “Why Is Lyme Disease Not Covered By Insurance?”
Good day…thank you for your outreach to Lymes patients. I was diagnosed last May, 2019 with late-stage Lymes via VA healthcare. Although my symptoms include some “floating” joint pain and body fatigue, my major disfunction has been cognitive, ie: memory, focus/concentration, foggyness, and present awareness. “Depression, mood swings, irratability and flare-up anger are some of the factors that forced me into seeking help. The people around me couldn’t take it anymore. No recollection of infection but great suspicion ive carried this for many years justifying myself as depressive, ptsd’d and cycling thru disaster after disaster.
As stated, my healthcare is thru VA. My treatment experience has been filled with acceptance, compassion and sympathy, but little knowledge on how best to treat. I’ve received two doxy treatments and currently refuse further antibiotics. I have been giving green light for civilian options with paperwork as proof. I have top tier Lymes facility where i work in Minocqua, Wi, but they wont even accept federal insurance when its available. Amazed! I live in northern Wisconsin. Can you help me?
I have Medicare only. I am convinced I have late stage Lyme disease but I know I can’t afford to seek treatment. I don’t know what to do.
I’m 67yr old male. I had a tick on back of neck under hairline back in 1978. My mother removed it with her cigarette. Within a week I got Bell’s palsy. I know I have Lyme since 50 percent are false readings. Ive lived with joint pain osteoarthritis, stenosis of the neck and lower back. Had surgery for the back but is inoperable. I get back injections from time to time which help with pain in legs mostly left. Had palsy also on left side of. face. Also suffered for years with cluster headaches. Those are brutal. It’s really a shame that insurance won’t cover something that’s called a disease. The only thing I’ve found thru the years were anti inflammatory drugs that really helped. I wish you the best!
I’ve had 2nd Stage Chronic Lyme Disease for almost 11 years now. My entire life has changed drastically. I divorced my wife after witnessing her steal my medication for the 5th time. We were together a total of 12 years. How can someone say they love you while watching you cry out in agonizing pain knowing they are the reason you can’t get out of bed because you have no medicine left..?
On the flip side, I met the love of my life 6 years later who was overly loving and supportive. Even to the point of helping organize a Lyme Disease Run/Walk with vendors to give out different types of information and products to help people with Lyme. We were truly in love. I started an antibiotic treatment through a Lyme Disease Doctor in D.C. It was to last 15 months. It was rough!!!! I lost a lot of sleep from the excruciating pain it caused. Pain from irradiating the existing bacteria in my body. The brain fog kept getting worse. I was prescribed 2 additional medications. One to help with sleep and a the other to help with depression and relax the tension and radiating pain in my body. After being on the meds for about 2 weeks I was starting to regain some much needed sleep and the pain would spread out more and was not as deep or as sharp as it had been. She asked me one Saturday morning while driving together to get coffee, if I remembered the night before? I could hear in her voice that something was wrong. I pulled the car over to the shoulder of the parkway. I didn’t remember anything but taking my meds, getting into bed and watching TV with her, then it was morning. She told me I had forced myself on her. She said she had to push me off of her because I was not coherent or responding to her at all. Needless to say I was very confused, ashamed, hurt and angry. She said she knew and could tell it was not me and forgave me. We both cried. I stopped taking the sleep medication. I went back to melatonin. We were happy and a few months later I proposed to her in Aruba while we were there celebrating our anniversary. About 3 months later we were both in bed watching TV. I had taken my meds about 2 hours before. Somehow we got into an argument and it got physical. I’ve never really been angry with anyone in my life?! I have no recollection of how or why we were arguing but my brain woke up suddenly… I saw I was holding her arms down. I could see my hands around her wrists clenched. The love of my life, the spark in my soul, the woman I was going to marry and hopefully have kids with one day. I can still see her beautiful hazel green eyes in my head, starring up at me helpless and terrified. We started seeing a counselor and were basically separated. It was my fault. I woke up in some type of RAGE?! I was standing? I was very upset and MY hands were clenched around her wrists? How??!! Remeron/Mirtazapine. The medicine given to me by my Dr…
It won’t get out of my head. It’s been 3 years. I don’t blame her. She had two teenage kids already and I was unstable. I think about her every single damn day. I hate myself and I hate that Lyme Disease has stolen my life. I hate that there’s not enough known about Lyme “Disease” because it’s not recognized. I hate that insurance companies will not help. I hate that my life has become a “Catch 22” scenario. I have to work to make money and live. I cannot work without medicine. I can’t get help or medicine without money from working… I hate medicine. I hate my life. If I didn’t love my parents, my brothers and their families or my dog… I would definitely not be here. Not even because I love them but because they all love me and I can’t hurt them.
If I gave my pain and everything that comes with it over to another person they would drop down to their knees, scream a silent scream and die.
Don’t give up.
You’re needed. And important.
The Universe is saying so.
Praying for you, James. My family is also dealing with chronic Lyme. I feel very fortunate to have found llmd practicing functional medicine and natural remedies. Curcumin is huge help with pain. Also magnesium maleate to calm restless legs and help sleep.. insurance is useless except to cover lab work that tells doc what is happening functionally inside the body so supplements can be added to fill in gaps. Doc also deals with heavy metals and molds that produce mycotoxins. All of them interact to prevent getting rid of the disease. Know that good people are working to help correct how this diseases and others are handled. look for methods to detox that stuff from your brain. I’m seeing changes that give me great hope for all of us suffering these terrible diseases. God be with you.
Reading all this really hits home. Regular doctors are clueless. They say go see a lyme literate doctor. That’s all great if you have 600-800 a visit. It’s called the millionaires disease for a reason. I went to my regular primary doctor with a bulls eye rash, fever of 101.8, joint pain, light sensitive, neck pain, swollen lymph node at the site of the bulls eye rash. She told me I had a UTI and gave me an antibiotic for that but I didn’t have a UTI. I fired her. But the antibiotics almost killed me as I had a horrific herxhiemer reaction. The worst pain I have ever experienced. I had all the symptoms of bartonella, babesia, mycoplasma, and I activated EBV. This was 2015. In 2008 I had a freak accident and dormant lyme came out but I didn’t know it until later on. I know now I’ve had lyme for decades. After my back surgery in 1989 I started to have symptoms that were odd and was sent to a rheumatologist who told me I had fibromyalgia. Then I was told by several neurologists no way I had that because I was a personal trainer. I was recently at a new rheumatologist and she said I didn’t have that she called it post Lyme disease syndrome. After being mostly bedridden for a few years and after thousands of dollars in supplements I finally got my lyme into remission using 10x CBDa. I was seeing a lyme doctor until he had a major stroke and closed his practice. My new primary is awesome she is not lyme literate but anything I tell her she investigates it and goes for it. I was bit again at Thanksgiving and I sent it out to a lab and it came back positive. So I’m just taking extra 10x CBDa, sleep spray and pain cream. Detoxing is key and using supplements to help rid the brain of toxins. I use TRS for the heavy metals. I was getting my life back then the pandemic hit and was back in my house again. I also had the rages, attacking my husband who is a saint. I would have meltdowns which I had no idea what would trigger it. I have endured an enormous amount of loss over the last 9 months. Stress can flare up lyme too. So meditation is good to do on a daily basis along with some exercise if you can do it. Following a strict diet is key. No sugar, no dairy , no gluten. I have been left with many autoimmune diseases from this disease but I can function pretty much doing what I used to do. I’m now 64 and I have had lyme since I was 7 years old.
I am so thankful that this last tick didn’t have any co-infections. If you want any info on the CBDa text me at 610-850 four four eight zero. God Bless you all and someday a cure will be found. Hang in there
Clearly the war that needs to be waged is against the IDSA. They are the barrier to effective treatment.